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I’ve recited the words so many times thinking I understood what I was saying then suddenly, as I lay in bed saying them first thing this March 25th I really did see what they mean.

It’s like we see the moon when it’s full, then we use a telescope and that’s an entirely different experience.

“As all the conquerors and their offspring of the past Resolved to reach the unsurpassed supreme enlightenmentI will also reach the state of BuddhahoodTo benefit my mother beings equal to space.”

Enlightenment is when what my senses perceive is no longer distorted by my concepts and emotions. It’s when I am aware of everything just as it is.

Then, when my awareness is entirely unobstructed, I can behave as a Buddha. No selfishness. No acting on ideas. Just acting kindly, doing what truly helps.

What a wonderful birthday experience.

I’ve written about birthdays before. It strikes me now that they celebrate a separation. March 25 is when my body separated from my mother’s in 1944. April 20 is when in 1970 it separated from its birthplace, England. March 25 this year is when my mind separated from another of its veils.

When I was introduced to the poetry of William Blake in High School I knew immediately that he saw reality more clearly than anyone I’d encountered before. “The universe in a grain of sand”. But what did he see and how had it happened?

I read other mystics, Christian, Muslim, Hindu and more. They were all seeing the same thing but I was no closer to seeing it myself. I read Gurdjieff, Ouspensky and more. I was going to need a teacher but how to find one, especially one I would be willing to follow? And it all seemed incompatible with earning a living, anyway, which was my growing worry.

I was very lucky to stumble into the computer world soon after I left school and I enjoyed almost forty years doing all kinds of things there. It was only when I left it and began trekking in the mountains of Nepal that I resumed my spiritual quest.

By then I was no longer searching for a different experience of reality. My goal for several years had been to transcend my selfishness. Now I wanted to understand if spiritual practices accounted for the gentle, respectful and cheerful culture I saw in the mountains and if so, I wanted to do those practices.

I was not mistaken about the positive impact of the spiritual practices but it took me several years to find a teacher, then several years of doing the practices before I noticed any change.

I was able to continue because I’d found a teacher who is a compelling role model as well as a very practical guide. He is encouraging or fierce depending on what I need at different times and he is very specific about what I must do.

My glimpse of the enlightenment that enables Buddhahood is something I will likely only ever glimpse. But as I continue to identify and shed my concepts and habitual emotions I will glimpse it more often and act more often with kindness.

For as long as I live I must keep practicing because emotional habits and the stories going with them that make us act violently, lustfully or with cruel indifference have very deep roots.

This year’s birthday gift continues to inspire me as I keep stumbling on toward Buddhahood.

To my family Jan 22 — When I retired I told my staff I’d listed all the things I wanted to do and had discovered I’d be 145 years old before I finished. So it’s quite an adjustment after a long and mostly very active life to get used to being unable to do almost any practical project.

It’s usually not frustrating or disappointing, just a big change and I’m used to those. I’ve always enjoyed reading so now I do more. I’ve also started watching opera on YouTube in the evenings and I’m enjoying that, too.

If it becomes too hard to read or operate my phone and computer I’ll do more Buddhist practice and I’ll keep doing it in my practice room for as long as I can climb the stairs. I’ve reestablished one hour-long session per day. Two would be better but I’m more tired than before our road trip.

I’ve been tired ever since we got home. I’m pretty sure I caught the bug that was making Felicity tired but I suspect I’m mainly at a new level of weakness.

It’s two and a half years since my first symptoms and the life expectancy of ALS patients averages two to five years so it would be surprising if my body kept going for more than another year or two and for sure it will continue to lose function, so I’ve been giving that some thought.

I had the feeding tube installed a year ago because I was still relatively strong but I doubt I will want more such things to prolong a life that will become more and more of a burden for Felicity and less and less happy making.

I was just put me in touch with a guy who has ALS and is taking Radicava infusions. We’ve had ALS about the same length of time but his symptoms are progressing more slowly, which he attributes to the drug. Symptoms for ALS patients progress at different rates, though.

My neurologist did not recommend Radicava for me because it has been proven only to help patients in the early stages and it only slowed things a little even for them. I decided against it because it is administered by infusions and it costs $150,000 a year.

I’ve already lost much quality of life and I didn’t want to lose more with the infusions. Also, Felicity may need that money and if she doesn’t I’d rather it helped fund our grandkids’ education.

Perhaps Medicare would pay but that doesn’t feel right when at the very best it would only delay my death a little bit. The huge cost of that would fall on everyone who contributes to Medicare.

There’s a lot more to think through. We must both make our treatment wishes more detailed. What would I want done or not done if I’m seriously enfeebled but my heart could be kept beating longer by some intervention? We’ll try to be specific about that ahead of time.

At what point should I move to a hospice and which one, or could I get hospice care at home? Much better to die at home because hospice staff are not required to attempt violent resuscitation. Ambulance and hospital staff have no choice unless I make an advance directive and it’s readily accessible when needed.

I hope these thoughts don’t make you sad. I’ve said before how unhealthy it is to avoid talking about painful topics. How can we know how to act most lovingly if we don’t share our ideas and feelings about how best to respond to what is inevitable?

To my family Feb 2 – I keep rediscovering that it’s impossible for an ALS patient to know for sure how they’re doing. I’m as weak physically as I was at the start of the month and I might be weaker but I have more mental energy so I’m less constrained by my physical weakness

Especially this week, the second week of Doma’s visit here, I’ve been able to spend long hours at my computer helping her find a job and establishing a tracking system so David, Ilana and our friend Dean can keep track of all the contacts we make in this project and don’t miss any follow up actions. I couldn’t do much except read novels the first half of the month.

Is the difference that I caught the bug that made Felicity so tired and now I’ve recovered? Or am I feeling better because I’m doing something productive. Was I depressed before and didn’t recognize it? All the above? No way to know, but I did catch the bug.

What’s very good about ALS is it forces you to recognize that your life will soon end — it always could have ended at any moment — and it gives you enough time to prepare.

Felicity and I are also blessed to have an extremely thoughtful and kind hospital nurse for terminally ill children as a daughter-in-law. Julie strongly recommended Caitlin Doughty’s “Smoke Gets in Your Eyes” to her Facebook friends. We got a copy and learned much that we didn’t know.

We now know it’s possible to have a Green Burial. My body doesn’t have to be embalmed and buried in an impenetrable box. It can be a source of nourishment for other beings. I like that. Felicity found a Green Burial cemetery nearby and we’re going there for a seminar in April.

We also discovered it isn’t necessary for a funeral home to be involved at all. You could say your farewells to me in our home, not some anonymous place where odd music plays and strangers simulate mournfulness.

Julie also helped us see there are more scenarios to consider than just the ones covered by a “do not resuscitate” advance directive. Thank you again so much, Julie.

Most ALS patients die because their breathing fails. Unless I establish a “do not intubate” directive, emergency workers would insert a tube down my throat and force air into my lungs mechanically. I could be kept alive that way for a very long time. I wouldn’t want that for either of us to endure and there are other possible situations Felicity and I must plan for. We’re lucky to have enough time for that as well as for more fun things.

If I am buried from home I may have to give up on something I promised. My Tibetan Buddhist teacher once mentioned that it’s hard these days to get human skull caps that are used as bowls in some ritual ceremonies or thigh bones that are used as trumpets. The next year I asked if he would like mine. He said he would and I felt honored.

Felicity has always worried about the logistics of getting that done but she is of course supportive. What might have been possible to arrange at a funeral home may not be possible if I am buried from home.

My teacher offered to send a lama to perform the traditional practices just before and after I die. I’d have to be at home for that, anyway, but it’s unlikely we will know when I’m close enough to death to call for the lama. I have more research to do to know what’s practical. Maybe none of it.

Speaking of practical, we tried a wheelchair this week while visiting the Hershey Chocolate factory. I found it a lot easier than walking and I had no negative feelings about being in a chariot. I also don’t miss my long hair and showering is much easier.

The talk feels 100% authentic and it’s so well delivered. A couple of key things the speaker learned are, there are no dying people — we’re changing, growing and dying in every moment we’re alive — there only living folks and dead ones, and however much we might try, we cannot orchestrate another’s death. So I’ve been watching a lot of opera recently to beef up my own orchestration skills 🙂

We got home from our long road trip around the middle of the month and planned to visit our three sons for Christmas. I was quite a lot weaker than when they’d last seen me and I didn’t want them to be surprised so I sent them the following note.

Hi Guys, I included health related events in some of my road trip emails but it’s a while since I gave an overall picture. It sounded gloomy when I started writing this so I stopped because that gave the wrong impression. I felt a bit low that day but I almost always feel happy to be alive, enjoying the things I can still do. I just rehung prayer flags that blew down a couple of nights ago then walked round the yard, for example, but I’ll start with what I wrote then because I’d be pretending if I gave the impression that I never feel at all low.

I wrote: My equanimity is incomplete today. I’ve been tired since we got home from our road trip, exhausted the first couple of days then with a little more energy each day but with no improvement the past couple of days. I’m tired of being tired.

I’m not aware of telling myself stories about my possible future. I completely accept, as far as I can tell, that my strength will keep declining. I think it’s just that my limits really are a nuisance and I can’t get used to what I can still do because the limits on that keep increasing. It continues to be an adventure, a thought provoking opportunity for learning, but right now it’s as if I’m in an area where it’s colder than I’m used to and it’s raining.

I’ve walked round the yard a couple of times since we got back. I had to keep stopping to catch my breath the first time and I was wearing my neck brace to see how that would feel. It was uncomfortable. I didn’t wear it the second time and I felt stronger so it was more enjoyable.

I expect I’m disappointed that I stopped getting stronger and our trip is over and that’s compounded by frustration over my nostrils being so plugged the last two nights that I couldn’t use the BIPAP. Not using it may, of course, be why I’ve been so tired yesterday and today. Felicity did a lot of vacuuming and air filter cleaning and I’m breathing better today.

Another factor could be having our first really frustrating experience because I can’t speak. It was the first problem we’ve been unable to fix. I realized how difficult everyday life must be for those who are more disabled than I am.

So, here’s what’s going on as best as I can tell. My diaphragm, neck, leg and other muscles all continued to weaken in the months we were on the road. I was driving, which requires little muscle strength, and I was getting very little other exercise so I didn’t notice any change until it recently became an effort to hold my head upright. Now I’m home I’m walking a bit more, climbing the stairs and whatnot, so I am noticing that my body is weaker.

I hadn’t had the energy to climb to my practice room until yesterday afternoon. I sat meditating for half an hour, and although it felt similar to reflecting in other places it was more productive in the place Buddhist teachers refer to as a container. I’ll reestablish my practice up there for as along as I can climb the stairs.

We need strength to control our body. We also need it to control our mind, our consciousness There’s nothing I can do beyond what I’m already doing to avert my loss of physical strength but I can keep on gaining more control of my mind. The new challenges I will keep encountering as my body keeps losing functionality will give me new opportunities for learning so long as I view them in that way.

To summarize, I’m happy to be alive today and I almost always am but I don’t want to pretend I’m entirely happy in every instant. How could I be when I don’t yet have full control of my mind? It doesn’t play scary videos about my future but I do still hear gloomy background music sometimes when I get very tired. I’m less tired today because Felicity persuaded me to take a half measure of Nyquil last night in case my nostrils blocked again. They did and I had to take off the BIPAP but I got a lot of good sleep, anyway. Thank you so much, Felicity for that and for all the other things you do! I’m blessed to be with you.

January 3rd – Being with family for the holidays were very happy times.

It was also tiring. Our last visit was on New Year’s Day and by the time we got home I felt I’d reached a plateau of permanent tiredness.

It wasn’t true, just a story I made up. The next morning I decided to restart pushing myself, not hard but every day. I would resume my daily Buddhist practice and build it back to at least an hour. I would walk round the yard every day, and/or do something productive. This afternoon I tried to jump start my car that died while we were away and determined the problem is something other than or in addition to a dead battery. I also drove the mower around to charge its battery.

I sent my health update to Doma, too. She now goes for teachings by my first Buddhist teacher. Here’s part of her reply to what I wrote; “You spend most of your life in equanimity but disruption of that state is a very natural human experience. The realization of that means you are conscious and with consciousness comes work. Today, Anam Thubten said practicing Buddhism and meditating would be so boring if you do not find a piece in you that needs work.” He’s so wise and so funny 🙂

The focus this month was on my reduced lung capacity. My diaphragm is weak enough that I’ve started part-time use of two machines. My overall strength is dropping but I’m still in pretty good shape. We’re about to set off on a two-ish month road trip all round the States while I’m still strong enough.

August 7 – to my family

Six months ago my only serious weakness was in my mouth and throat muscles. My diaphragm had begun to weaken but I wasn’t feeling it and I figured the 74% breathing capacity result I got then was artificially low because air was leaking through my weak lips. It was only when I could barely get any reading from the spirometer at home last month than I recognized my diaphragm really had weakened. That explained why I was getting tired so quickly when I did physical work.

So I wasn’t surprised that my breathing capacity this time we went to John’s Hopkins was down from 74% to 39%. However, although I’ve lost muscle mass on my arms, shoulders, and legs, the technicians pronounced me strong. I’m far from as strong as I was but I have no trouble balancing.

I asked how much longer they guess I will be able to walk — 18 to 24 months although of course “results may vary”. That’s better than I expected and at the very least we should be able to enjoy our cross country road trip in the rv starting next month.

They’re getting me a BiPap machine to wear at night that will push more air into my lungs and a Cough Assist machine to clear secretions from my lungs.

I’m feeling less tired today than since I got home from the retreat. I rarely had health problems in the past and I always recovered quite quickly when I did, which means I expect tiredness to be temporary. More broadly, I expect I will recover from ill health. I know I’m not going to recover from ALS and that I will grow more tired more of the time and I will continue to lose strength but I have no experience to set realistic expectations. The lack of a crystal ball doesn’t bother me, I now experience how things really always were. We never know for sure what will happen.

My Tibetan doctor has taken me off the precious pills and put me on a different regimen for the next month. She’s had very intermittent internet access for the past few weeks while travelling in remote areas of Tibet so I don’t know specifically what these new meds target.

August 18 – to my family

The director of the John’s Hopkins ALS clinic arranged for me to visit a pulmonary doctor based on my 39% breathing capacity test result and he set me up for more breathing tests. When we went for them on Wednesday I couldn’t get my lips round the spirometer mouthpiece so it was impossible to get a reading.

Next we went for my six month checkup with the neurologist who specializes in ALS. All three of us enjoy these visits and find plenty to joke about. He’s intrigued by my Tibetan Buddhist practice and medicines and because he’s Indian I greet him with namascar, hands together and raised in the blessing prayer. He reciprocates and we repeat the gesture when we part.

He had me walk, balance on one leg and hop on one leg. I had no difficulty doing that with either leg so he says the 39% breathing capacity result must have been falsely low. Some of the air I breathed out must not have gone through the spirometer but escaped around it because my lips are too weak to make a tight seal. Nonetheless, he says it will be good for me to use the BiPap machine.

I asked him about the conflict between two things I’ve read about ALS. One is that an environmental factor triggers a latent defect in the genetic structure of motor neuron cells so when they replicate, the RNA in the new cell does not produce the correct motor neuron behavior. The other is that motor neurons, unlike our other cells that replace themselves every seven years, do not replicate.

He said motor neurons and other cells that make up the central part of the brain are not replaced. Most experts do believe ALS is triggered by environmental factors but there are many theories about what is triggered. I forgot to confirm it, but the fact that motor neurons don’t replace themselves must mean that stem cell treatments to replace them will not work.

So, the neurologist is pleased with my overall condition. His only suggestion was that I should get a Botox injection to cut the excess saliva I’m producing now, which medicines aren’t sufficiently reducing. Felicity and the grandkids will be pleased about that 🙂

Yesterday I had my annual checkup with my highly skilled and delightful primary care doctor who is from Pakistan. She noted that I am weaker than I was a year ago but am still in pretty good shape. She prescribed for me to have shingles and flu vaccines because I must minimize the risk of getting things my body needs to put energy into fighting off.

I seem to be recovering from the exhaustion that left me unable to do anything but sit reading for the week following the Buddhist retreat. We got our 23 year old RV (same age as Doma) back a couple of days ago from having its water and waste tank gauges replaced (the only defect I found when I was living in it at the retreat) and I was able to repair its ladder to the roof, which took a couple of hours and involved much climbing up and down a stepladder. I had to rest for a few minutes near the end because I was short of breath but overall the project went much like before I had ALS.

I’m not suggesting that I’m recovering or even that my strength is no longer declining, just that my exhaustion last week may have been an anomaly.

My visit with the pulmonary doctor will be at the very end of the month by which time I should have gotten used to sleeping with the BiPap machine.

I’ll let you know how I get on with the machines and what the pulmonary doctor says at the end of the month. Then we’ll set off on our great road trip.

August 20 – from my Tibetan doctor

The Basam Lhalung and Samnor formulas are both aimed at regenerating your kidney function and overall capacity to generate the bodily constituents (cells and tissues of all constituents of the body).

Basam Lhalung rehabilitates the kidneys particularly after excess stress and load causing inflammation. This helps the kidneys to regenerate and then focus on proper filtration, function and mobility of chuser and neural flow.

Samnor supports the rlung flow and vitality particularly from the rlung generation region of the pelvis. It cleanses the chuser related to immune and neural function, cycling and signaling, and helps rebuild the foundation for their function.

Both of these formulas are aimed at rebuilding your energy, stamina, kidney function and overall bodily constituent base.

August 31 – to my family

Our first appointment at Johns Hopkins yesterday was for a botox injection to control my dribbling. It seems odd to administer a powerful neurotoxin to a patient with a neurological disorder but it makes sense. The injection is given from outside the mouth into the salivary glands.

It stung quite painfully for a very short time on the right side of my face but not the left and I was not aware that anything had been done after a minute or two. They start with a very low dose so I’m to continue with the tablet I’ve been taking. It will take a week or maybe more before the botox begins to work and it will take longer before I know if the dose should be increased. I’ll need to have the injection renewed every 3-5 months.

The second visit was for more tests of my lung capacity and functioning. The technician this time was more persistent than the one who gave up earlier in the month. We got a reading of 38% capacity breathing in and 35% breathing out. You’re recommended to use a BiPap machine at night if your capacity is below 50%. He also took an arterial blood sample.

I’ve been getting used to the BiPap for a few days. Breathing with its help is easy enough but my mind isn’t used to having something strapped round my head when it goes to sleep.. The cough suppression machine is more challenging physically. It blows air forcefully into my lungs, then sucks it back out with what feels like even greater force. I look like a bullfrog.

My first visit with the pulmonary specialist at the end of the day was reassuring. The oxygen and carbon dioxide levels in my blood are perfect so my lungs are working well. He asked many questions about my activities and listened carefully with a stethoscope then told us the 38% and 35% lung capacity readings are falsely low, just as my neurologist said.

ALS patients with bulbar onset typically get artificially low lung capacity readings partly because weak lips mean air escapes around the side of the test instrument and also because muscle signalling weakness makes it hard to push and pull one’s breath as forcefully as the diaphragm muscle could really accomplish.

So, since I’m pronounced healthy enough to enjoy our maybe two month long road trip, I’ll now go back to packing 🙂 Here’s the RV. We’re not calling it The Leisure Seeker haha.

My circumstances this month were especially happy. On July 3rd Felicity and I shared champagne to celebrate our 53rd wedding anniversary.

A week later I went for three weeks of Buddhist teachings and practice with my so wise, kind, clear, practical and funny teacher.

I don’t know if my health changed last month. I needed more sleep, but I always do get tired at meditation retreats. I soon stopped participating in the 6 am session. Then I went to bed instead of the 8 pm session. I was sleeping anywhere up to 13 hours and not feeling bad about it 🙂

A dear friend’s question at the retreat about how my Buddhist practice helped me to attain a measure of equanimity led me to reflect on what led me to this path.

The Tibetan aspect was sparked fifty years ago when my aunt Madge gave me “Seven Years in Tibet” for my birthday. It told me nothing about Buddhism but it left me longing to go to Tibet.

What led me to Tibetan Buddhist practice is more complex. To explain that I must say a bit about some life experiences and their results.

Until I was five we lived in a tiny and very remote house with no utilities at all and we were very happy. Then we moved so I could go to school. My parents needed more money to live in that place and they never had enough after that. Watching them, I developed a great fear of poverty.

In High School I tried to figure out what to do with my life. It seemed the most important thing would be to attain wisdom. I’ll explain why in a minute. I read about Zen Buddhism, Sufi and Christian mystics, I read existential philosophers, Gurdjeff and Ouspensky, Jung, Aldous Huxley’s experiments with LSD, and so much more.

But I could not figure out how to start and in any case it seemed impractical. My greatest emotional need was to escape from poverty and I thought the way to do that was to amass money. So I got a job picking apples, then one in an office when all the apples were picked, and there I stumbled upon computers.

By the time I was 35 I was leading a data communication business with a staff of 100+ that contributed a third of the profits reported by the larger business of which it was part. Then we were acquired by a much larger business. My operation was inconsistent with their strategy so it was shut down. I was devastated.

It did not occur to me that my response to that event was creating the suffering I inflicted on myself, my family and others, not the event itself. I had constructed an imaginary future that would among other things end my fear of poverty, and I was fiercely attached to that dream. It had come to an end but I could not let it go.

Not understanding that I was the creator of my own suffering, after many months I changed my circumstances. I started a consulting business that would have multiple clients, not be vulnerable to changes at just one. Effective as that was, it did nothing for the root problem.

Buddha recognized and taught that the root of all our suffering is poisons in our mind, our conceptual mistakes and emotional habits. The one that was triggered when my dream business was shut down, attachment, remained ready to poison me again when I retired, as I’ll explain in a minute.

Another poison is anger. I was lucky that was not a problem for me. My father was a pacifist from a family of them and I inherited their abhorrence of violence. That was what made me think my goal should be wisdom.

The utter madness of WW1 had ended only 26 years before I was born, I was conceived at the height of WW2, and nuclear WW3 was imminent when I was in High School. What could be more important than seeing how to bring an end to that violence?

Jealousy, another of the most destructive poisons, didn’t seem to be much of a problem for me because my parents had none but as I will also explain in a minute it was in fact a huge obstacle. The worst obstacles are those we don’t even see.

I was blessed that the poison of pride was not much of a problem. My parents paid no attention to what others might think of them. They had strongly held values to guide their own behavior and they did not have the habit of condemning others.

Actually, the longer I live the more blessed I realize I am by my mother who died worn out when she was 59 and I was 23. She grew up with two younger sisters in a Catholic orphanage, trained as a children’s nurse and was utterly convinced that if there was a problem, she could fix it. She gave me confidence.

As I grew older I began to think back over my life. I had sometimes noticed myself acting selfishly but it was only after I retired from years of too long days of obsessive work that I recognized my self-absorption. It took even longer to see the origin of that selfishness.

My mom loved children. She had no more of her own after me but when I was 6 or 7 they got me a foster brother. I never acknowledged him and remember almost nothing about him. At some point my parents and the social worker decided to send him back to an orphanage. The explanation I remember is that he didn’t fit in.

Later, I got a foster sister who became a great disappointment to my mom. I had even less to do with her. She ran away forever when she was around 16.

I was so ashamed when I finally recognized how I had treated my siblings. At last I realized how self involved I was. My behavior was poisoned by jealousy and what is translated from Buddhist texts as ignorance, which means being unaware and uncaring.

A little later I had my next great encounter with a broken dream. Reflecting on that I finally began to recognize that I was also poisoned by attachment.

The upside of the acquisition that ended my network business was enough profit from stock options to buy a run down farm. I wanted to recreate my early childhood world. We raised sheep for a few years but my jobs left me too little time for farming. I dreamed that when I retired I would learn to make excellent hay.

By the time I stopped spending twelve hours a day in my office two hours away from home as well as many weeks overseas on business, Felicity had decided she must fulfill her own lifelong dream and live by the ocean.

So now I was powerfully attached to two incompatible things, Felicity and the farm. Abandoning the farm was what finally showed me that source of my suffering, attachment.

So, having at last recognized that my mind was poisoned by attachment, jealousy and ignorance I was very ready when I finally stumbled upon the results of Buddhist training. Trekking in Nepal I met people whose culture was cheerful and kind, which I thought must result from Buddhism.

I began seeking a teacher. Felicity met one while I was away in Nepal, Anam Thubten, whose presence and way of being was an extraordinary inspiration. He exemplifies the kindness I’m aiming for but I needed more instruction on how to proceed.

I meditated intensively for days and weeks at Zen Mountain Monastery whose exceptionally wise abbot, Shugen Sensei, told us the central truth: “If you really want to end suffering it’s very simple. Just stop creating it.” I didn’t know how to meditate though.

Then I met Phakchok Rinpoche and I knew instantly that I must do what he said. I had always rejected authority but this felt entirely different. Rinpoche knew what I must do and he would tell me. I don’t know how I knew that. It was such a blessing.

At that time I had made a little progress on attachment and recognized my most devastating poison, ignorance, along with the jealousy that triggered it, so I was well positioned for training in how to dispel them. I was also well prepared to gain equanimity because I had always been fairly calm. My mom had given me deep confidence.

What all this experience has taught me is, it’s extremely difficult to recognize, much less overcome our mind poisoning habits without a training program. I didn’t learn much until after I found one, mostly just created suffering that prepared me to respond.

If we want to change we must find a program that feels appropriate for us then follow it diligently, not worrying about whether it will actually work.

And above all we must never forget why we are training, what we want to attain. A wise friend at the retreat put it this way: “We are not training to be Buddhists. We are trying to be Buddha.”

So ALS turns out also to be a blessing because it makes it much harder to pretend I’m not going to die. It’s easier for me to keep in mind that my life will end soon.

It’s also easier to accept that although I can’t, in this body, end all the suffering in the world, it’s enough to do what good I can while I’m here. I can spread some kindness.

I was surprised when I tried to use the spirometer the ALS At Home study gave me along with other tools to monitor my health. To use it I must blow through a tube at the end of which is a fan to measure the strength and duration of my out-breath. I knew it would be hard to stop some of my breath from escaping around the tube because my lips are so weak. What surprised me was discovering I can no longer take a deep breath or exhale forcefully. My diaphragm is weak.

When I was thinking about it a few days later I remembered having to pause to catch my breath when I was using the cross-trainer. The first time it happened was less than three minutes after I started. I had to stop and pant for a minute or two. After that I was careful not to push myself when I started and I worked my way up to 30 minute sessions that were fairly vigorous. I imagined the problem had been weak leg muscles that rapidly regained strength.

Now I realize my diaphragm was already weakening. That was over three months ago.

It looks like my breathing muscles are on the same trajectory as my mouth and throat muscles followed. There was a long period where the decline was quite slow, then the pace accelerated. Or maybe the weakening didn’t accelerate but just reached the point where the result was a serious loss of function.

There are external devices that enable one to keep breathing when the diaphragm can no longer do the job. When they no longer work you can have a tube installed in your throat and have air pumped in and out that way. I’m guessing life would continue to feel worth living with an external device although it would severely limit what I could do. I don’t think I’ll want the throat tube but I’ll keep an open mind and see how I feel as my symptoms develop. The advanced directives we signed years ago specify no heroic measures to preserve a non-functional life.

I continue to feel blessed to be alive now with you as my family. I paused work on the summer kitchen so I could sheet rock the porch wall with its new windows and I’ll start installing the trim today. It looks much better already. Next month I’ll go for three weeks of teaching and practice in Cooperstown, NY and when Felicity returns from celebrating Megan’s 90th birthday at the end of August we’ll go on a road trip in the RV for a month or two. The adventure will continue. We don’t know for how long but we never did. That’s in the nature of adventures.

July 1 – my current thoughts

It’s a blessing that ALS progresses slowly, doesn’t impact cognitive function and that my only pain is from biting my cheeks and tongue. I have time to notice the results of losing muscle strength, and reflect on the implications.

Wearing shorts these days, I notice muscle twitching in my legs, like eddies in a river. My leg muscles are still my strongest ones but the motor neurons that control them are dying.

An apocryphal and a true Buddhist story have been on my mind.

The Buddha, on his travels one day, met an old man beside a river. “I’m so happy to see you again, master,” said the man. “I have practiced and practiced since you taught me so many years ago. Finally, I succeeded! Yesterday I walked across the river.” “Oh, you poor man!” the Buddha exclaimed. “There is a boat just round that bend. It would have taken you across so easily.”

I never wanted to do miracles. In High School my life’s goal was to attain wisdom, but how to start? Decades later I started trying to become less selfish. Now I just want to grow more aware and more kind.

The true story is about a revered Tibetan master who had diabetes. Leading a ritual practice one day, he picked up his damaru drum that you hold with thumb and first finger. His fingers could no longer hold the drum upright. What did he do? He laughed.

Acceptance of negative circumstances is not doleful for those who have sufficiently trained their minds. Surprises of any kind are an occasion for joy. That’s worth practicing.

Where I am now, almost all the time, is in interested equanimity.

Earlier this month our middle son was married in a beautiful ceremony framed by events to celebrate the occasion. Their photographer captured it perfectly. It was a joyful time that also provided me an insight.

Some who die in villages in the Himalayas are said to cause trouble, especially those who die in an accident. They don’t realize they’re dead. They want to communicate just like before but they can no longer be seen, heard or touched. Nevertheless, their family members feel their attempts to communicate. I didn’t believe that explanation. I figured the trouble arose in the minds of the grief stricken living and wondered why it was attributed to the dead ones.

I saw why at the wedding when I experienced a weak form of what the troubled dead are said to feel. I can communicate one on one by typing on my phone but that’s not effective in a group. Because I cannot drink or eat by mouth, I could only watch others. To a much more limited extent I was like the dead villagers, present but separate. It was an interesting feeling.

Meanwhile, I’m so lucky that I can still do things! The porch looks so much better already, our terrific painter will hide the gaps, and then it will be perfect.

Living with ALS is the same as it was before in that I can’t know what will come next.

This month I noticed twitching in my right side. Since I have ALS, that probably means the motor neurons that control the muscles there are dying. My mouth and throat muscles have continued to weaken for almost two years but all the others seemed okay. That seems to have changed.

The most likely future suggested by the twitching is I will lose the use of my legs and most of what I can do with my arms during the next year although other alternatives are also possible I might regain some vigor by working outside this summer, or I might stay as I am for quite a while.

The only thing I can be sure of is my body will shut down sometime. I feel blessed to be alive right now no matter what my future. I’m so lucky to have lived long enough to reach that degree of wisdom and to still have the potential to wake up more completely.

May 11 – to my family

There’s been no great change in my health since the last time I wrote but there are a few things I’m tracking.

The Tibetan Kundey medicine seems to be reducing my mucus production, I’ve started applying a nasal spray before going to bed and I’ve had less nostril blockage while trying to sleep. I need to see this go on longer before I declare victory, of course.

I’ve also been coughing less often although I do still cough more than in the past.

I had a couple more incidents late in the day when I suddenly began coughing violently and had great trouble drawing breath. It didn’t feel life-threatening, just something I must quickly overcome. The bad part was Felicity’s distress because I couldn’t explain that I felt sure it was a transitory problem. I imagine it resulted from weakness of my epiglottis letting saliva drain toward my lungs instead of my stomach.

I haven’t yet overcome excess salivation. Atropine drops seemed to increase salivation so I went back to the pill three times a day. Most recently I’ve continued with the pill and applied atropine before going to bed. That seems to be helping. I haven’t yet figured out what triggers excess salivation. I get spells of high production while the rest of the time it’s not a problem.

Those problems and the cheek biting don’t bother me much because I’m used to them now. I don’t like having such low energy, though. Felicity asked if I think being 74 could be factor. Of course not 😉

I haven’t felt like exercising on the cross-trainer recently but I spent most of the day a couple of days ago replacing the anti-rabbit fence around the vegetable garden. That felt better than being on the cross-trainer, not boring. My next project is to repair the bottom of the back wall of the summer kitchen.

My stomach was a bit disturbed while I was doing the fencing because I’d experimented with different foods the two previous evenings. Felicity had bought salmon and I tried some along with my usual three kinds of veggies. That had no noticeable effect so the next night I had salmon again but with broccoli and potato since I’d run out of my usual veggies. I also added two scrambled eggs because I feel I’m not getting enough protein. Oh, and both evenings I had a beer, for hydration, you know.

My gut continued to feel slightly distressed so I’ve eaten only formula the last three days but with the addition of a cantaloupe and yogurt smoothie in the mornings and more water. I’ll go back to veggies instead of formula this evening. I would never have given any of this any thought in the past. It’s impossible to know how much attention to pay now.

It’s worth paying some attention. Because of the discomfort and extra tiredness after working on the fencing I finally thought to look at where casein and soy, the primary ingredients of my formula, lie on the acid/alkali spectrum. They’re both relatively acid-producing which my Tibetan doctor says I should minimize. So I’ll start cautiously replacing more of the formula with foods that are more suitable.

I’ve been accepted into the “ALS At Home” study to assess whether ALS patients can monitor their vitals themselves and send the results to their doctor. That means I’ll be able to monitor my lung capacity and other things. I’m eager for that because I’ll be able to know for sure if there are any trends.

I’ve been doing a lot of reading while Felicity is away on her painting trip in France and doing some opera watching. Coloratura soprano Kathleen Kim is spectacular and Sonya Yoncheva’s voice is so beautiful. But try watching Yoncheva perform Casta Diva on YouTube then watch Callas who somehow goes beyond beauty and raises goose bumps.

Tomorrow I’ll drive to Hampshire College to take videos of Doma presenting her thesis to the Computer Science folks on Wednesday and the Natural Science folks on Thursday. She’ll be presenting for parents of this year’s graduates on the day before commencement . Very cool!

May 26 – to my family

The end of pollen season along with the Tibetan anti-mucus medicine brought me relief from the blocked nose that was making it hard to get to sleep, and I have not had any more coughing fits that make it hard to breathe.

The ALS At Home monitoring equipment came a couple of days ago and I’ll learn how to use it this weekend. I have to pass an online test before I can actually use it and at least some of the equipment uploads the results so I’m not sure if I’ll be able to access them but it’s a worthwhile program, anyway.

I haven’t yet changed my diet because I’ve been away from home quite a bit going to Doma’s graduation and helping her move out of college.

The negative news is I noticed twitching in my right bicep a couple of nights ago and again last night and there’s twitching in my right thigh this morning. That means the associated motor neurons are dying. The ALS is spreading. Felicity said she noticed twitching in my right shoulder a couple of months ago but hadn’t seen it since.

I’ve been feeling unusually tired for a while. As I mentioned, I stopped exercising on the cross trainer. I thought it might be a combination of age — I should expect to have less energy now I’m 74 — along with the wasting effect of getting little exercise over winter. It looks like the greater factor is progression of the disease.

I’ll keep you posted of course and give a bit more thought to future plans. Before I noticed the twitching I’d suggested we might take a road trip in the van and take the rest of Doma’s stuff to her in California where she will be living with David and Ilana before finding rooms near wherever her job turns out to be. I’m going for three weeks of practice with my Tibetan Buddhist teacher in July so we should probably take our road trip soon after that.

Please try hard not to be upset by my news. We can’t know how long I will remain healthy enough to continue a relatively normal life, but we never could know that, anyway. None of us can know our future.

I’ll continue doing things I enjoy and adapt to changing circumstances. I’ll do less of what requires strength and more of other things. In particular, we intend to spend more time with you 🙂

Speaking of things I enjoy doing, here’s how the summer kitchen is looking now. Do you remember how it looked originally? When it stops raining I’ll finish that wall and start on the floor.

I try, on the anniversary of my discovery of America, to reassess my understanding of reality. Last year I saw it as an ever changing energy field where what “we experience as the Earth, our own body, atoms and so on do not in fact have fixed boundaries or any intrinsic nature”.

What, though, is experience? It’s the product of consciousness, but what is consciousness?

We might say anything is conscious that grows, adapts to its environment and can communicate. Trees are goal-seeking and communicate with each other, though, and it’s a stretch to declare them conscious.

A more stringent definition includes subjective properties of experience, qualia, that occur inside our minds. That excludes trees, but what about animals? We don’t really know which animals, if any, have qualia. Explaining how and why we have qualia is the famously hard problem of consciousness. Why and how is our existence something we experience?

What in fact is this thing we call mind where qualia arise? Dictionaries tell us mind is“The element of a person that enables them to be aware of the world and their experiences, to think, and to feel; the faculty of consciousness and thought.”

But the mind also thwarts consciousness. It shows us things that do not exist. My mind did that, for instance, high above the Kathmandu Valley, showing me first a man in black, then a bear and then another menacing man, not one of whom was there.

All that’s puzzling enough but is mind a product of our brain or is its substrate outside our body? Each of us arises from the universal energy field that does not have boundaries. Could mind be an aspect of that energy field and also be without boundaries? Could consciousness be a feature of the universe, like gravity?

And if mind is a product of our brain, is its scope localized there? Do its inputs come only from the body of which the brain is part? Dreams sometimes seem to incorporate real events we could not be aware of via our traditional methods of perception: taste, sight, touch, smell, and sound.

Also, do actions our mind initiates occur only via physical links in our body? And are its operations even constrained by time? The CIA published a summary of a great deal of research indicating that we can both initiate action remotely and see events before they occur.

Most of us have at least some experience of knowing what someone is thinking before they speak or when they are out of contact. Species that flock communicate with each other so rapidly that shared thought seems the only explanation. And there’s so much more — some dogs, for example, know when their human master is about to have an epileptic fit.

There is a range of phenomena related to consciousness that don’t fit with the view that our mind is localized to our body:

Remote viewing — the ability to know something that is happening at a distance without the use of the physical senses

Remote influencing — the apparent ability to alter physical manifestation in an intended direction without a chain of physically causal events

Precognitive dreams — a person dreams about events that happen in the future

Survival hypothesis — consciousness continues after physical death

We call those phenomena anomalous because they should not exist if matter is the way we experience it, made up of continuously existent, indivisible atoms located within an absolute space and time. If matter is that way we could, if we knew all the equations governing the spatial positions of fundamental particles as a function of time along with the initial conditions, know everything about reality including all that happened in the past and that will occur in the future.

Those phenomena are not incongruous, however, with our understanding of quantum physics. Particles appear and disappear and we can know only the probability of their occurrence, space is not fixed and time is not absolute. What we categorize as anomalous phenomena are inconsistent with the world we experience but not with the underlying reality.

What that suggests is, phenomena we consider anomalous but which have often been observed could be real aspects of consciousness.

Increasingly over the past year I’ve been puzzling over the Buddhist teaching that names the energy field I wrote about last year dharmakaya and the forms we experience nirmanakaya. There are three kayas; dharmakaya, sambhogakaya and nirmanakaya. I’ve been trying to see the nature of sambhogakaya.

My teacher explained sambhogakaya this way, that it manifests as five divine wisdoms:

All encompassing space that projects consciousness and is the source of compassion

Mirror-like wisdom, the purified form of “form”

Equality wisdom, bias toward none

Discernment wisdom, perception, and

Action wisdom, the purified form of “concept”

I’ve been thinking especially about the first wisdom, all encompassing space that projects consciousness and is the source of compassion. My Buddhist practice is increasing my compassion, my urge to act kindly. It just happens. I also grow more aware of how self-absorbed I still am.

What’s happening is, I’m slowly shedding mental habits that obscure reality. Our mind matches fragments of what we perceive against its gallery of pictures, stories and concepts, then we act on what it in fact made up. That’s how above Kathmandu I saw creatures instead of what was there.

But why would fabricating less of what I experience result in compassion growing stronger? Compassion must be an attribute of consciousness. As I grow more conscious the natural result is I act more kindly.

When we can’t quite define a word it can be helpful to consider its opposite. The dictionary tells us that opposites of conscious include unaware and unresponsive. A related word is alive so another opposite of conscious is dead. The deepest opposite of consciousness, however, is dreaming.

When we are dreaming our mind is not in touch, or very little in touch, with its environment. Our fully conscious mind processes its environment accurately, however, providing us with a pure perception in response to which we are naturally happy and kind.

Consciousness was missing from my model of existence last year. I hope to have fewer questions about it next year.

My neurologist says I have one thing wrong, my motor neurons are dying, for which there’s no cure. My primary care doctor says I am healthy apart from the impact ALS is having on my face and throat. My Tibetan doctor’s observations, however, and her consultations with a Tibetan specialist in neuro-degenerative diseases say my condition is complex but may be curable. Here’s an overview of the theory and practice of Tibetan medicine along with some detail about its diagnosis and treatment of my condition.

Tibetan medicine is based on theories and practices derived from what developed into the major medical systems in India, Persia, Greece, and China, as well as ancient Tibet itself. The primary diagnostic tools are highly sophisticated forms of perceptual skills that recognize physiological data through sensory means. One of its most developed diagnostics tools is pulse analysis. Inspection of urine and the tongue are also important. Treatments include medicines primarily made from herbs and minerals, physical therapies like moxabustion (a form of heat therapy), massage, needle therapies (similar to acupuncture), and changes to behavior and diet.

The fundamental theory is that disease originates from wrong levels of nyepa, three bodily energies named rLung, tripa, and béken, each of which has five subcategories with specific locations and functions. Disease results when these energies are disrupted by unhealthy diet, activity and/or environmental triggers. The specifics of an illness vary with each patient’s background.

The theory seems unscientific to those of us who learn about human biology in the West but some recent research has shown correlations between the nyepa metaphor and modern genomics. The symptoms classified under nyepa are in any case real enough so it’s best to think of them as diagnostic categories with related metabolic profiles and systemic similarities.

Each of the nyepa is a potential cause of illness. It is often said that disease results when the nyepa are out of balance but it’s more that each of them needs to be in its proper biochemical pathway, function, and degree of activity than that they need to be balanced relative to each other. The three mental poisons—desire, aversion, and delusion—are the root causes that manifest the three nyepa. Imbalances in them show symptom presentations that relate to these three emotions. Everything that appears originates in the mind.

rLung,(pronounced loong) drives all motility in the body (the ability of organisms and fluid to move), including all neural signals and muscular impulses. It powers the circulation of our blood, respiration, our nervous system’s activity, sensory clarity, memory, the thoughts in our minds, and food through our digestive tract. Defective rLung manifests from the poison of attachment/desire.

Bad-kan,(béken) maintains our physical structure; provides cohesion and adhesion in the body in terms of physical bulk, body oils and fluids; and facilitates joint health, sleep, and mental stability. It creates a sense of satiation, contentment, and tolerance and allows us to have a stable mind. Defective beken manifests from delusion/ignorance/indifference.

Tibetan doctors begin their diagnosis by asking the patient about their medical history and relevant parts of their personal history. They then examine the color, odor, sedimentation, scum, vapor, and, after vigorous stirring, the size, color, amount, and persistence of bubbles and any deposits in a urine sample. Next the doctor feels twelve distinct pulses at the radial artery of each wrist for the width, depth, strength, speed and quality of the pulse. The color, shape, texture, moisture content, cracks, and coatings of the tongue are examined along with characteristics of the eye, such as the sclera (the white outer layer of the eyeball), to further confirm the diagnosis. The doctor may also look for sensitivity at certain pressure points on the body. The doctor’s own body is the diagnostic instrument.

Treatment includes behavioral and lifestyle modifications such as meditation which I was already doing, dietary changes, herbal medicines and in some cases moxabustion heat treatment, acupuncture-like needling and/or other physical methods. Treating ALS and other neuro-degenerative diseases primarily with precious pills is one of the methods used extensively by Amchi Lobsang Dhondup, due to years of observing patient response.

There are several kinds of precious pills. The one prescribed for me is Rinchen Ratna Samphel, a compound of 70 ingredients that is indicated for, among other maladies, facial palsy and speech impediment.

I take a Ratna Samphel pill once every 3 days to support proper development and function of rlüng pathways, particularly upward-ascending rlüng. It cleanses the blood, rebuilds bodily constituents from cellular level to tissue level, consolidates and expels excess heat from improper blood formation, relieves tension in the upper body and re-establishes the functioning of rlüng, gut and blood together. It releases toxins, rebuilds healthy white blood cells, facilitates proper neuromuscular signaling, decreases inflammation and infection and supports immune strength. It also supports mental stability, stress management and sleep quality.

Mine is a rlung–béken compounded condition. My high calorie diet is required because my body has a decreased capacity to eliminate toxins/pathogens. rLung re-balancing requires nutritious, dense foods rich in high quality oils, and my deteriorated béken functions require foods that are easy to digest and that restore the digestive fire which breaks down what I ingest, assimilating what is useful and eliminating the rest. Persistent bubbles and foam in my urine indicate that my overall béken level is too high. That my rlung and bekan are disrupted indicates that my condition is associated with the poisons of attachment and indifference but not hatred, which has long been my own diagnosis.

Because Tibetan medicine explains things differently from Western medicine, here is a more detailed diagnosis of my condition. It includes:

Upward-ascending rLüng disruption which impacts movement at the throat, larynx, pharynx and upper esophageal region, the tongue and nose. This can be triggered by acute incident, traumatic event, or coordinated conditions. In my case it was allergic reaction to the brown tail moths.

Deficient liver-gallbladder synchronization with the gut which inhibits fat metabolism and overheats the liver and gallbladder.

Kidney imbalance resulting in the disruption of all intra- and extracellular fluids, interstitial fluids, serum, lymph, and cerebral spinal fluid, and the related metabolisms and processes between fluid spaces in the body. This indicates immune compromise, and other disruptions in cellular signaling, lymph cycling, and filtration processes.

My gut’s ability to separate the nutritional essence, dangma, from the waste products, nyikma, at all cellular levels is reduced and is not well supported by my liver and gallbladder. That disrupts my metabolism, impacts regeneration of all my bodily constituents, and causes excess heat and friction at the tissue and joint level.

rLüng needs warming, nourishing foods to eliminate inflammation that wears on the immune system pathways and decreases function throughout body tissues and organs. Proper metabolism is necessary within the joints and tissues and related organ activity, lymph cycling, waste elimination and so forth.

When I was eating by mouth, I increased my intake of fresh foods and cut way back on coffee and the spicy, sour and salty tastes I love. Now I take food via a tube directly into my stomach, I’m consuming 2,000 calories worth of soy-casein formula daily plus 500-600 ccs of a pureed mix of organic green (e.g., collard greens), colored (e.g., beets) and sulfur-family (e.g., mushrooms) veggies. The veggie part of that diet is a combination of Tibetan medicine recommendations and the Wahls Protocol.

I also recently began taking an Oxaloacetic acid tablet daily because a researcher colleague of my Tibetan doctor considers it may help. I expect I’ll need to increase my current total of around 2,500 calories on which I’m maintaining a weight of 140 lbs as my strength returns and I can do more physical work again. My doctor will also recommend that I gradually replace more of the soy-casein formula with foods better suited to healing my condition.

I currently exercise in a way that is not aggressive or exhausting. Our gut needs the support of exercise to stoke digestive heat, promote metabolic fire throughout the body, and get the lymph system better at identifying nutritional essence versus waste. Intense activity would aggravate the rlüng and heat pathways within my body. My current program is 40 minutes of work on a cross-trainer, 350+ calories worth, on days when I don’t take a precious pill. My chief goal is to regain lung capacity that I didn’t realize I’d lost over winter. I’ll keep building the intensity of that program slowly as my legs regain strength. I also need solid rest to help align and calm the rlüng. I sleep 9 hours a night on average.

Nourishing environments are also important, which means I now avoid harsh winds and moist or cool areas that would worsen my kidney heat deficiency, and harsh sound environments that are harmful for rlüng. I will enjoy warming sunlight as soon as it returns but not overexpose myself to its heat. I balance my time between people that feed my spirit (face to face and online) and being in solitude.

The pre-conditioning defects in my body’s energy systems that were triggered into ALS by a severe allergic reaction almost two years ago had presumably taken a long time to develop and the disease itself has since done serious damage. It would be unrealistic to hope for a quick recovery and Tibetan medicine is not expected to restore health quickly in any case.

Amchi Lobsang Dhondup has achieved persuasive results with Multiple Sclerosis patients but he has been treating ALS patients for less time and ALS is different, a nervous system disorder not an autoimmune disease. He has a shorter history of success with ALS but it’s enough to be encouraging. My facial, mouth and throat muscles have continued to weaken slowly since I began his treatment almost eight months ago but I have not yet experienced the twitching in other muscles that is the first symptom of motor neurons dying. Since I’m able to rebuild my strength with exercise, I believe I lost it over the winter not because of ALS but because I got almost no exercise then and I was not able to eat enough.

My treatment program may be slowing the progression of ALS and it’s possible my body is slowly curing itself. There’s no way to know. What I do know is I am blessed to be alive now and I will continue to report with equanimity whatever happens in the future.

This month I established an exercise program, added live foods to my diet, began taking a supplement that may be effective against ALS and continued to do a lot of reading.

March 12 – to my family

I’ve built up to 35 minutes on the cross-trainer now, focusing on rebuilding leg strength and breathing capacity, not pushing too hard, and it’s making me feel better overall. I do that on two days then rest on the third when I take a precious pill.

I’m still pretty feeble but I was able to cut down a 25 foot tree in the corner of the vegetable garden without difficulty and I’m almost finished removing a fallen tree where the rabbits hang out along with the huge wild rose that grew up around its base. The only problem I ran into was some acid reflux when I was digging up the roots, which I also experienced picking up branches I’d cut off the vegetable garden tree.

I also had a fairly bad reflux an hour after breakfast this morning for no reason I could see and maybe that will continue to be an issue since all my food is now liquid. I’ll squat to pick things up instead of bending and see what other changes help. Several more trees fell or have large broken branches after the high winds so I’ll get plenty of practice outside.

I’ve started to add live foods to my diet that can be pureed enough to go down my narrow tube. My Tibetan doctor gave me a list of foods to eat more and less of before I got the tube and we’ve refined that based on the Wahls diet recommended by a friend. Dr. Wahls originally developed the diet to cure herself of Multiple Sclerosis then built it into a program that’s proven effective for a wider range of diseases.

Cantaloupe, kale with stems removed, avocado, onions and mushrooms have worked well so far. Beets, bell peppers and broccoli should also be fine and I’m hoping to strain the seeds out of raspberries. I have to avoid fiber that’s insufficiently blended and seeds that could clog the tube but other than that it’s just a matter of blending for long enough with enough water. I was surprised how much water I had to add to avocado.

Another friend sent information about an over the counter supplement, oxaloacetate, that is said to be effective against ALS. My Tibetan doctor says it could be possibly helpful since it is an important component of the Krebs cycle, which the Wahls diet promotes. One of her colleagues will review some recent unpublished studies to see if there is convincing evidence that it’s specifically helpful for ALS. Meanwhile, since she says it would not hurt to try oxaloacetate, I’ll do that.

I’ve been reading for an hour or so after each meal to let the formula settle and I’m guessing I’ll need to keep doing that. I do a lot more reading on precious pill days and spend quite a bit of time online. As my mind slowly regains sharpness I notice I’m spending less time following the news and being more selective about opinion pieces. I’ve been catching up on what turn out to be some excellent books.

March 29 – to my Tibetan doctor

My facial muscles are continuing very slowly to weaken but I’ve regained some strength overall and I’m feeling good. The weather continues too cold to work outside most days but it will soon change and I’m eager for that. I’m happy and having no trouble maintaining my equanimity.

I began adding veggies to my diet on March 8. By the 14th I was taking 500-600 ml of pureed green, colored and sulfur veggies every evening and I stopped taking a fifth container of Nutren 2.0. My weight had stabilized at 140 lbs on a daily diet of 2,500 calories from 5 containers of Nutren but with the added veggies I was gaining a pound a day. Now on a steady daily diet of 2,000 calories of Nutren plus the 500-600 ml of the three kinds of veggies I’m re-stabilized at 140 lbs. I’ve had no trouble digesting the new diet and it feels healthier than formula alone.

I began taking an Oxaloacetate tablet daily on the 19th. I haven’t noticed any results and don’t expect to for quite a while, if at all.

I built up slowly from 25 minutes on the cross-trainer at the start of March on the two days when I don’t take a precious pill to 40 minutes. The cross-trainer says that’s 350+ worth of calories. I keep my maximum heart rate at twice its resting rate or less. I’m focusing more on rebuilding the lung capacity I didn’t realize I’d lost over winter than on leg strength. As my muscles regain strength I’ll increase the intensity of the workout correspondingly so as to maintain the overall benefit.

I’ve applied to participate in a program to establish the extent to which ALS patients can measure their own vital signs. If accepted I’ll be able to track my lung capacity and etc.

Restoring my dharma practice has been a slow process after I stopped temporarily while recovering from the tube insertion. I continue to do two daily sessions of an hour each, starting at around 10 am and 4 pm and my motivation remains strong but I’m much more vulnerable to discursive thoughts and the experience is weaker in general. My concentration is slowly improving, though, and I have been getting occasional glimpses of new aspects of what’s pointed to by what I’m saying. I was much less prone to distraction when I was able to chant aloud.

I have to sit quietly for an hour or so after each 500 ml liquid meal to allow my stomach to settle because if I don’t, I’m apt to get stomach contents coming up my throat. I also have to be careful not to bend forward too far any time I’m doing anything physical because that causes acid reflux that I never used to experience at all. There’s probably nothing I can do about it but I’ll ask the ALS clinic folks at Johns Hopkins.

A couple of other things I’ll ask them about are a recommendation for an over-the-counter way to ease the nose blockage I often get now my weak lips make blowing my nose impossible, and if there’s anything I can do about the cheek biting I experience most of the time now my cheeks are so weak that they flop between my teeth. Neither of these is a big problem but I’d enjoy not having the experiences.

I’m still enjoying the extra reading I do while resting but I’m increasingly eager for productive physical exercise, too.

Several people have asked me to write about Tibetan medicine and my own treatment program. I’m close to finishing a draft based on a combination of research and content extracted and edited from your emails. I’ll send it to you for feedback before I publish it because I don’t want to mislead anyone. I hope you’ll have time for that.